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Lupus/Autoimmune disorder?


I am 36 yrs old. A few months ago, I was sitting outside in the sun. Upon coming inside my
Hands started burning as though I had stuck them in the snow- it was around 60 degrees that day. Soon after I developed a rash on my hand. Then intense pressure in my fingernails which lead to them turning purple and then brown. My hands started aching and feeling weak. They progressively got worse. Now I have days that all I can do is cry bc of he pain and weakness in my hands and arms. Around the same time all of
This began I was diagnose with POTS (postural orthostatic tachycardia syndrome). My blood work came back positive for ANA and SS-B but negative for SS-A. I have been waiting to get in with a rheumatologist for almost two months. After a very difficult day last week with my hands and arms, my primary care physician put in a referral to get an EMG and meet with a neurolgist in a week. I am really losing hope and feel like I am losing my mind. 12 yrs ago I was diagnosed with anticardiolipin antibody syndrome but once I got pregnant with my second child I was told it was a misdiagnosis. Does any of this sound familiar or can you point me in the right direction? I just want answer to what is wrong with me.

Hi there-
Thanks for writing in.
I'm so sorry about the long wait for the specialist. I have been there, and it's really frustrating.

It sounds like you at least have Raynaud's.
I have lupus SLE, Raynaud's, Fibromyalgia, and Sjogrens. So those are the illnesses I am most familiar with.

The discolored and painful fingernails sound like Raynaud's.
The other tests and symptoms do sound autoimmune and possibly lupus SLE.

Raynaud's is not a big issue for me, in that I just don't let my hands get cold, then I don't have any symptoms. If they do get cold and they hurt, I run them under warm water for a bit. But I'm not sure my Raynaud's is a severe case. My bigger problem has been the lupus. Everyone is different.

I can't really diagnose anyone over the internet (especially since I'm not a doctor or even a nurse, just a fellow patient, and a holistic health coach).

If things get bad enough (hopelessness/ unbearable pain), just go to the ER, or to an Urgent Care facility, and try to get some answers and some relief. I was diagnosed with lupus at an Urgent care center after spending the night in the ER because I was in so much pain.

Not knowing what's wrong is a tough place to be.
As is being in pain. So if you need some help or relief before your appointment finally rolls around, go ahead and do that for yourself rather than just suffering while you wait.

I wish you speedy and compassionate care-

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer - Carla's book "How Can You NOT Laugh at a Time Like This?"


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Carla Ulbrich


I can answer questions such as "what is lupus?" (How common is it? Is it contagious? What are the symptoms? etc.). Also, I can answer questions such as "what are the available treatments for lupus?" (both standard and alternative). Really, I'll take almost any question on lupus, though. If I can't answer it, I'll be very surprised, but I'll also go find someone who can.


I've been living with lupus (SLE) since 1992. I've had three severe bouts with it, including symptoms such as kidney failure and stroke (if you can call having a stroke a "symptom"). I have completely regained my health, though I have to be mindful to take care of myself, lest I get sick again. I use both mainstream and alternative medicine, and have tried just about everything under the sun to alleviate symptoms. A lot of it worked.

Lupus Foundation of America Association for Applied and Therapeutic Humor Toastmasters Folk Alliance

How Can You Not Laugh at a Time Like This? (Tell Me Press, pub.) What is Laughter Lupus Sundial Newsletter

BA in music (UNC-Greensboro)

Awards and Honors
Novelty Song of the Year, Just Plain Folk Awards Winner, South Florida Folk Festival Song Competition Lupus Foundation of America Seal of Approval (for book)

Past/Present Clients
Medicaid Conference Alaska Palliative Care Conference Right at Home Health Care SePHIMA Anritsu Club Med Nursing in Practice

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